Dignity not fully upheld when seeking health care: Experiences expressed by individuals suffering from Ehlers-Danlos syndrome
Dignity not fully upheld when seeking health care: Experiences expressed by individuals suffering from Ehlers-Danlos syndrome
复制标题
DOI：
10.3109/09638280903178407
复制
发表时间：
2010-01-01
影响因子：
2.2
通讯作者：
Randers, Ingrid
中科院分区：
文献类型：
--
作者：
Berglund, Britta;Anne-Cathrine, Mattiasson;Randers, Ingrid
瞄准在整个世纪的西方世界，人的尊严原则在伦理学和宪法中占有重要地位。它要求尊重每个人的独特性，把他或她作为一个主体，而不仅仅是一个对象。因此，这一原则构成了医疗保健的道德基石。患有Ehlers-Danlos综合征（EDS）的患者对医疗保健和卫生保健专业人员的知识提出了挑战，因为症状有时是模糊的。据报道，患有这种疾病的人在寻求医疗保健时没有得到尊重。描述在保健情况下，患有EDS的个人经历其尊严没有得到充分维护的遭遇。进一步的目的是描述这些经验的长期后果。一个研究特定的问卷设计，其中个人与EDS描述了他们的遭遇与医疗保健从个人的角度来看。经过定性内容分析，确定了以下五个类别：“被保健专业人员忽视和轻视”、“被指定进行心理和/或精神治疗”、“仅仅被当作一个物体对待和考虑”、“被侵入个人领域”和“被怀疑有家庭暴力”。这些遭遇的后果是“不信任医生”和“冒着健康不佳的风险”。对于EDS患者来说，不被尊重的记忆是相当大的，可以持续多年。因此，造成了对保健系统的不信任，他们在今后的保健服务中可能会遇到困难。因此，保健专业人员的行动应基于保护人的尊严的规范，并确认每个病人都是一个独特的人，有资源和能力掌握自己的生活。
Aim. The principle of human dignity has assumed importance in ethics and constitutional law throughout the 20th century in the Western world. It calls for respect of each individual as unique, and of treating him or her as a subject, never as a mere object. As such, the principle constitutes an ethical cornerstone in health care. Patients suffering from Ehlers-Danlos syndrome (EDS) challenge medical care and knowledge in health-care professionals' as symptoms sometimes are vague. Individuals with this disorder have reported not being respected when seeking health care.Purpose. To describe encounters in health-care situations when individuals suffering from EDS experienced that their dignity was not fully upheld. A further aim was to describe the long-term consequences of these experiences.Method. A study-specific questionnaire was designed, where individuals with EDS described their encounters with health care from a personal perspective.Results. After qualitative content analysis, the following five categories were identified: 'Being ignored and belittled by health-care professionals,' 'Being assigned psychological and/or psychiatric explanations', 'Being treated and considered merely as an object', 'Being trespassed in one's personal sphere' and 'Being suspected of family violence'. Consequences of these encounters were 'Mistrusting the physician' and 'Risking bad health'.Conclusions. The memory of not being respected is substantial for individuals with EDS and can last for years. As a result, lack of trust for the health-care system is created and they may experience difficulties in future encounters with health care. Therefore, health-care professionals should base their actions on norms that protect human dignity and confirm each patient as a unique human being with resources and abilities to master their own life.